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Cian Joseph Crowley entered the world on March 7, 2006. He would spend the next five months living the life of any normal infant – eating (his favorite pastime), sleeping (a close second), playing, and learning of the world around him. Cian, a name which means ‘ancient’ in Gaelic, was a healthy, thriving child who was consistently in the 100th percentile for height and weight and on-track for all developmental milestones.
However, this would all change in August of 2006. On August 18th, Cian developed a black eye, seemingly out of nowhere. This was the first sign something was wrong – yet his pediatrician’s office was not concerned. Within days, he started to act very fussy, which was not Cian’s demeanor at all. He stopped eating, which led us to wonder if he was possibly teething or had an ear infection. We took him to Urgent Care on the 21st – we were repeatedly questioned on the black eye by a nurse practitioner; while it was looking pretty bad, we had no choice but to be honest and say we did not know how or why he got it. He was diagnosed with an ear infection and given amoxicillin. Cian proceeded to vomit all day the next day, so to the ER (a pediatric ER) we went. Again the black eye was questioned, but not examined. He was given IV antibiotics and then diagnosed with a common childhood virus - hand, foot and mouth disease – and we were sent home.
The next day, Wednesday, Cian was lethargic – but we thought that was from the late night at the ER and the IV medication. Thursday morning, the 24th, we knew there was something still very wrong as Cian was incredibly sleepy and again not eating, so we made another trip to the pediatrician’s office. Unable to determine the cause of Cian’s lethargy, we were advised to go back to the same ER we had just been at two days before. The ER doc was very concerned about the black eye and Cian’s sleepiness so CT imaging and chest x-rays were ordered. Within 30 minutes we were told he had bleeding in his brain and clavicle bone fractures. As John and I wept, in a numb and bewildered state, the room started to fill with people - the thought was, this is an abused child. We were stunned – only three people ever cared for Cian: John, myself, and a nanny who watched Cian three days a week – and the notion she could hurt him was a ridiculous one.
There was great concern over Cian needing immediate neurosurgery so an ambulance was called to transfer us to Children’s Hospital Boston. As we sat in Boston rush hour traffic, we honestly expected Cian might die right then in front of us – he seemed barely conscious. Little did we know at this same time, the Department of Social Services was being contacted about the suspected abuse. When we arrived at Children’s, Cian was seen by a team of clinicians while John and I were questioned, separately, about Cian’s living situation, our marriage, etc. We then had to withstand seven hours of near silence as we waited for more information. At 10:00 that night, we got the diagnosis: Neuroblastoma. We had never heard of such a disease, nor did we know that it was possible for a baby to have cancer. We actually felt relief he was not abused.
While the doctors tried to paint an optimistic picture for us, as the next days unfolded, it became clear how sick Cian truly was – cancer, at stage IV, was present in his adrenal glands, lungs, liver, bone marrow, skull bone and brain (cerebellum). Cian was started on chemotherapy immediately and within about ten days, we were certain we had our bouncing, happy Cian back – it felt like a miracle.
But a miracle was not to be for our family – Cian succumbed to Neuroblastoma only seven weeks later, on October 13th – essentially the three rounds of chemotherapy he had completed failed to control his brain tumor growth, though the other tumor sites had been responding well. Something we have since learned about Neuroblastoma is that the mysterious black eye Cian had – actually known as ‘raccoon eye,’ can be a hallmark sign of the disease. Yet not one of the six clinicians that saw Cian that fateful August week seemed to know that. While we understand that getting the diagnosis earlier would not have saved Cian’s life, it may have given us more time with him, and it would have spared us the very painful accusation that was levied against us.
Not a day goes by that we don't think about our blue-eyed boy and the life he could have had. We take comfort in the work of Alex's Lemonade Stand knowing that its mission aims to further medical knowledge about pediatric cancer and help give children like Cian a fighting chance.
Jennifer and John Crowley
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